Friday, September 13, 2013

Reflective Practice

It was raining when I started to write this. Which was welcome, as 35 degree weather is not proper for Southern Ontario. Especially in September. We've needed the rain and the last growing days of the garden will welcome it and more.

The garden is not alone in welcoming this storm; the rain was soothing to my frayed nerves and the light show seemed to pick up my spirits. The last little while has seen a few things that have made me reflect... on life, on my job, on my advocacy and really, everything down to these words you see here.

I've been trying to make sense of a lot of things in the last little while, trying to incorporate new ideas, trying to understand the motivations behind certain things. It's been hard. Too much has happened, too much stimulation, too much, too much... Back, what seems like a million years ago, I had an older Italian lady as a patient. I sat down next to her one morning and after the usual pleasantries asked how she was feeling. Without missing a beat, her eyes bore into mine and she half laughed. "How I feel? Girlie, I canna stand, I canna sit still and my headsa goin' aroun' like a chick-a-loan!"

I know how she feels.

Although not completely cyclonic, my thoughts are pretty all over the place. I've written no less than three posts this week in an effort to get my shit together; they cover all flavours of outrage and pain and psychiatric analysis... and I have not published a single one. It's been hard. There's been too much. I'm fine... well, aside from a gallbladder that hates me, but the family is fine. But, there's been a little shakeup, a little wakeup... I've been doing some serious self reflection. It's a side effect of being a nurse, a pre-requisite of renewing our license and really a valuable tool for everyday life as well.

All the stereotypes have come out to play in the wake of the recent murder attempt of Issy Stapleton. I hate the intar-webezs right now. Over and over I have seen this act discussed (by both the able and the parent advocate) with words that just blatantly exhibit the intolerance that it sprang from in the first place. Yes, there is no doubt in my mind that her mother (who will not be named here) was mentally ill. The system in which she was navigating is very stressful to many parents, I won't argue with you there... but it still does not justify murder, or attempted murder in any way.

Many people, including some that I respect greatly, have commented on this incident at length. Anything that I would have to add, at this point, would serve little purpose. As a side effect however, this horrible act catalyzed a lengthy self-reflection re: my online advocacy; an analysis in the works for some time. I've looked at my efforts, my words, the rationale behind them. Are my affectations effective? I've had to do this. Issy's mom was a blogger and "parent advocate" too. Many self-advocates are wary or flat out despise blogs by parents of kids with special needs. This event just crystallized those reasons even more.

"Many of the memoirs I have read reinforce and thereby strengthen our
culture's dehumanizing stereotypes that surround and define disability.
Through their use of grief, their emphasis on a limited medicalized
model, and their framing of the child's disabilities, these memoirs
often represent the child not as a person but as a problem with which
the parents have had to grapple. "

It's a fine line sometimes, wanting on one hand to find others to share in the experience, but at the same time, what are the costs? When we call our children "broken", when we focus on our interpretation of their thoughts and feelings, when we refer to our children with otherworldly terms, when we focus on the difficult times, when all we list are doctor's appointments, surgeries and medical interventions, when we blame our kids for our mistakes and our bad choices, what message are we giving the world?

I just spent most of the month of April talking about my son's heart surgery. Did I unwillingly perpetuate the medical model? Has my son become a bystander in an accounting that was meant to educate and support those (and their families) that face AVSD surgery? Has my telling of appointments and whatnot in the early days been detrimental overall?

I don't know. I just recently checked my Ableism at the door, so I'm probably not the best at interpreting this.

Every time I mention one of the kids or post an image I do think about the ramifications. I think about it in context to them. It wasn't an easy thing to talk about my elder son's bullying for a variety of reasons, the main being Quinn's interpretation of such a thing. I talked it over with my husband, but I made sure that I asked my son's permission too, before I breathed a word of it.

Is this exploitative of my family? I don't know that one either. There are no T-shirts, I don't have a shop and there is no money being made here. (There won't be, either.) I already have a job, so looking for a writing career is not my intention. The focus of my writing has changed, true, from those early days when I just wanted to raise awareness, find other twins like mine and still research the things that I could not find out about Down syndrome and did not know about prior to becoming Wyatt's mother. Secondary gains? There are a few, including a general sorting out of my thoughts and meeting a lot of really cool people in the disability community that have helped to broaden my views.

Is it possible that I have reinforced stereotypes of disability? I'm sure I have. I too am an able product of this society that needs to devalue and ostracize to survive. I'm also a member of the medical establishment, the people responsible for the perpetuation of the idea that disability is a disease and needs curing. Toss parent blogger onto that list. On the surface, I'm part of the problem. No wonder I am uncomfortable in my own skin lately.

So why do this? Why continue doing this when there is so much conflict? That one is simple:

There are a lot of people out there that hate people like Wyatt.

Even those that claim to represent people with intellectual disabilities and developmental delays are often more concerned about image and the "correct marketing of Down syndrome" rather than basic, civil, nay, human rights. Allowing certain things to slide, things that you probably would not tolerate in another circumstance just reinforces these stereotypes and keeps things like across-the-board inclusion and acceptance out of reach. Portraying life in over the top happiness isn't helpful either, as it perpetuates "overcoming", instead of just letting people be themselves. My son is not a product to be marketed like Wonderbread, or the latest pop sensation.

I've gotten a little heat lately as I've been writing about some pretty "heavy" topics and apparently I should be more positive. I'd like to lighten up, frankly, to be able to write about my daughter putting fries up her nose and announcing she's a "Rawr-rus" and all the little human moments that make our little family. To make this more of a parenting memoir that focuses on the joy of being... well, us. Together. With all our little quirks and idiosyncrasies and adventures. But I can't. I can't because society won't let us just be us. One of us came with an extra chromosome. To us that's no big whoop, but it's still a dealbreaker to many people.

There are no conclusions to this one. Reflective practice, when done correctly, is an ongoing narrative. I know that I'm not going to do everything right, being human and all. I hope my self-advocate friends continue to be patient with me... even when I need a round of "able-splaining".

I'm going to go spend time with my kids today and make a buttload of tomato sauce. In the act of creating something to nourish my family through the upcoming winter, I will find a little more peace. As the twins interact with the jungle yard after the rain, as my elder son regales me with his day at school, I will be reminded why I do this. So that all my kids can one day tell me of their day at school, where Zoe and Wyatt and Quinn can continue to grow and learn. Together.

3 comments
:

I think your self-reflection is proof of the good person you are. You can't blog for others' expectations (or what you assume they might be). If you're in a negative place because of life events, and that's what's stewing around in your noodle, then the most productive thing is to write it out. Believe me, it will touch those that it needs to and it will matter, and it will help you in the process. I think you're the bee's knees, lady. New to your blog but I'm hopping around and it's AWESOME. Keep it up. :)

What You Have to Say About Down Wit Dat:

"Just wanted to let you know how much I admire you. I know you fight a lot of demons, both yours and for others, yet you still maintain that fantastic sense of humor, and more importantly, fairness. You are a constant source of light in the darkness, because you are beautiful inside and out..." - S. R.

"...Wonderfully written and one thing Jen does with her writing is make you stop and think ...and think hard." - J. Toner

"Before I had my little L., I never knew anyone with down syndrome, your page has given me so much hope for my little boy, the people who post pictures of their children and the things that you post are wonderful, its made it easier for me to understand and get used to, thank you, keep doing what your doing with the good work, much appreciation. X." - L. Barnes

"Your post (and the posts of others that you linked to) actually made me tear up a little. Growing up with a brother with Downs, I actually got into fist-fights because of "that word". Hearing it used as a derisive and insulting term by people who should know better (or by those who do know better but are just looking for attention in the case of Coulter) is NEVER ok. Thank you for speaking out.﻿" - I. Thomas

"I love these history posts. This is a TON of work on your part, thank you so much!" --N. Haegele

"I don't have any children yet, and I'm not sure how I ended up reading your blog. But it is absolutely inspirational. I'm so glad Wyatt was born into your family where I am sure he can live a happy fulfilled life." --artandtourism

"Above all, Jen is an amazing mother. She is honest and real, and inspires me everyday to love my "typical" child the way he needs to be loved, respect him as a person, and not even for one single second take him, or anything for granted. She allows me to venture into her life, and care about her and her family. What dear little children she has blessed the world with. She is planting seeds, nurturing and growing her family (and extended reader family) into people who will make this world a better place. Why aren't we all more like that?" —Penny

"Jen and her family have an amazing story and mission. Jen's writing reflects the difficult and triumphant steps of life with a special needs child; twins at that, and a older sibling. Thank you for sharing your families' strength with the on-line community."--S.B.

"I think I'm a little bit in love with Jen, and if she lived down the road I might just be a blogging groupie, not because I'm a crazy stalker I hasten to add, but because the easy warmth in which she tells her story convinces you that you are simply having an easy chat with your best friend. She has a subtle wit and craft to her blog posts, they are not just splurges of untamed emotion. This enables her to not only tell her story with honesty and in an enjoyable way, she also manages to impart a message without coming across as patronising or preaching. It's a rare gift for a blog about special needs."— Renata

"Having a child with special needs can be an isolating experience -- even more so when you live half a world away from your friends and family. Due to this, the internet became my primary source of support and camaraderie with other parents in similar situations. I read dozens, if not hundreds, of blogs about being the parent of a child with T21, and though most had positive points, for the most part they just didn't 'speak' to me and what I was feeling. Then came Jen and 'Down Wit Dat'. Suddenly, I heard a voice that was in harmony with the things I was feeling and going through. Her writing is so brutally honest, while at the same time insightful and informative...not to mention FUNNY! If there has been one thing I've learned on this journey, it's the importance of keeping your sense of humour -- even when you seem to be losing your sanity. Thank you so much, Jen, for putting out there the human, REAL side of our special club -- and being a voice for those of us that are so often unheard." — Dee

"I love the honesty, Jen never glosses over the difficulties and never fails to celebrate the victories. My children are not special needs but I can always find commonalities and it has opened my eyes to the fact that people with Down syndrome are not as different from the rest of us as they might initially appear. Since I've known Jen and been reading her blog my attitudes toward respect, and what it means, have changed. "The "r" word" particularly hit home as I had been ignorant to the effects of the use of that word. I do my best to help spread the message."--Susanne

"I have been following this blog for months now. I have nothing but positive thoughts and warm fizzy feelings when reading it. My only regret is not having found this blog when it was originally started. One piece that particularly sticks out to me, was the blog about the "r" word. I don't think I have actually cried so much reading a blog that wasn't about someone dying. I printed it off and shared it with many friends, because Jen is right. She struck a nerve and made me realize that not only myself, but there are many others around me that use that word without realizing how powerful it really is. Down Wit Dat is a blog full of enthusiasm, awareness, whole heartedness, truth, encouragement, laughter, but best of all, its full of Jen, FAMILY, and a look at what having a special needs child is about. Keep writing. You're amazing!" —B. Nason

"I love Jen's take on the special hand that she and her family have been dealt. I especially love that while she shares all her son's small victories she doesn't gloss over the challenges that she and her family face. The best thing I love about Jen and her blog is that she is constant supporter of the rights and challenges of kids and adults with Down Syndrome. She has provide a lot of insight that has opened my eyes and many others. I especially loved her blog about the "r" word. It opened dialogue with my family, friends and groups that I am a part; and I am much more conscientious about the words I used to describe people"--V. Saenz-Brown

"Jen's blog is wonderful! While I do not have a down child, as a mom, I relate to the everyday struggles of just doing your best, of the struggles, the heartaches, the joys of everyday life. Jen writes in a positive and uplifting style with just the right doses of humor thrown. Great read!" —Terra

"This blog is written from the parents perspective, which is important. Jen's story is not unique, but the way she tells it, with humor and honesty is wonderfully refreshing. It brings a real perspective that people can understand and relate to, and is a resource for parents of not just Down Syndrome kids but of all kids to know that life may not be perfect but that everyone has a unique way of dealing with it."—Kimberly

"I too am the mother of a down child. It gives me great giggles, sorrow, and camaraderie to read her blog daily. I find it makes life's little challenges more bearable. She is honest, upfront and a wealth of information. And I think her attitude is one many of us share and embrace. Even if she does not win, she is a huge winner already in my book. Lots of luck and love to her and her amazing family." —L.Grassa

"I love Down Wit Dat because Jen is so honest about her experience as a parent. Jen is not afraid to write about her vulnerability, anger, fear, joy, or love. She's an amazing writer! Jen's description of her blog is so bang on! I laugh and I cry, sometimes simultaneously."—Marla

"I am currently a Disability Services major in college and for my one class we had to find a blog by a parent who has a child with a disability to follow and discuss with the class every week. I have been following your blog for a couple weeks now and I get so excited to talk about little Wyatt and what an amazing family he has and the struggles and victories that you all over come daily! Someday down the road I hope to have children and if I am granted a special needs child I can only hope that I can handle everything that comes my way as positive and good as you do! You are doing an amazing job and are a great mother! Thank you so much for sharing your story!"--Anonymous

"Your blog is incredibly inspiring. I have laughed out loud, been in tears, and everything in between! it's fabulous." -HDSSG

"If you haven't been told today... you're awesome." - Trevor

"Wyatt is fortunate to have such a mom." - Anonymous

"...Thanks for your honesty and insightful points. It helps put our own thoughts into words to pass on when we encounter the same situations." - P

"I am enjoying reading your blog. I taught preschool/education for about 35 yrs and most of it was spent in CA where there is encouraged mainstreaming. I enjoyed having special needs kids...they bring a special and fun element into the classroom! I also had a young man with Downs who was my class helper at one time...he was so much fun! I wish people knew these things....as there are preconceived ideas..." - Jenny

"I remember speaking with you when you found out about the possibility of one of the babies having some abnormalities, and you did not know how you would handle it. My response was, once the situation arises you will find ways to deal with it. I must say, you have done so well with your children, especially with Wyatt. You are not ashamed to embraced what God has blessed you with, and to share your new found info with others who might be less fortunate, and to those who might be less accepting. I am sure you have empowered many people who are in the same situation and need a little love and support. You've turned negatives into positives. I must say you are an awesome mom. Keep up the good work, it not going unnoticed." - K. Garwood

"... I just started reading from the beginning... I am intrigued. It is so incredibly well written with so much love. There were parts I would start to cry. I felt your sadness and your happiness and your passion. These children are so lucky to have you as their mother. I can't wait to read the rest of it and get caught up!!! Thank you so much for sharing your life with us! ?" - M. Laine

"Just had a few minutes to read more of the blog and I must say I LOVE it! I could not agree more that so much of the info I found as a new mom was SO depressing. I didn't jump for joy with the dex of T21 but it wasn't anything I could change so we accepted -and started to read everything we could get our hands on. Can't wait to read more..." - E. Chesnut

"I wanted to say I love your blog. You write so honestly... Thank you for writing so candidly." - M. Antushevich

"Found your page completely randomly while trying to connect with other wine blogs like myself. I do not have any kids or know anyone with Down Syndrome but your blog really captivated me. I guess that is how good it is. Keep up the good work :) " - The Frugal Tasters

"There are going to be many times when i say how courageous you are! I do not think it can be said enough, you take YOUR time to educate and inform and rid parents of their fears! THANK YOU THANK YOU THANK YOU . I wish my kids were old enough to read and understand! Hopefully one day the maturity level will be there so they can and come to appreciate life more not for the big things but for the everyday moments that will mean more than the big ones EVER will! ?" - C. Cochran

"I, too have a son name Wyatt who happens to have an extra 21st! He was born 2/15/11! Thanks for sharing your story. We're in good company : ). " - R. Scheerer

"My daughter will be 8 in Nov. Unfortunately, my parents I felt were ashamed of my daughter. If only they had gotten to know her before they passed on....." - A. Welsh

"I always enjoy your straight forward, tell it like it is posts. People need this information. They need to know how their ignorant, or often well intentioned but uninformed, words and actions are frustrating, annoying and/or hurtful." - Shayna